Visit to Dr Schievink 9/22/09

[Berthabutt]

Have Scheduled visit with Dr S. 9/22. 9/23 Myelogram (Dynamic myelogram only done since January). High pressure, high volume blood patch 9/24 Thursday due to leak in upper thorasic/cervical area. If doesn't work scheduled for surgery on 9/28 Monday. We will be here regardless until 10/6.

Staying at Best Best Western Carlyle 1 mile from Hospital. Very nice.

Flight difficult. I have Trigeminal Neuralgia. Pressure on plane affected ears & pain on face 8 on (scale 1-10) unable to open mouth to talk or eat. Pain occurred more often. Dr. S says pain caused by CSF leak. Meds help but not for break through pain and they cause confusion at times and weakness. They do reduce ongoing pain enough to survive.

Will try to keep every one up dated. We arrived on Sunday 9/20 to get adjusted before everything happens.

Today Monday Pain is much better. Can eat & talk better. So flight was worth it. At least I am doing something to see if I can change things for the better.

Dr. S & his staff so far have kept us updated with everything that is going to happen and has answered all our questions which is more than we have had from our Drs in Tampa.

Sorry Bob for your concern. Some days I have very bad days and can't answer. Trigeminal Neuralgia is nightmare from hell. Meds are worse.
Thanks for your help and to everyone else.

Bertha

[mot]

Best of luck Bertha! That trigeminal neuralgia is horrible.

M:)

[Berthabutt]

Thank you Mot
Bertha Butt

[BOBinFLA]

I understand the email/communication difficulties. Knowing your limits and your priorities is very important. I'm just glad you're doing ok and that you are posting in the right place. Many more people read these posts than reply. Our prayers are with you for a great outcome.
-Bob

[Berthabutt]

9/22 Appt with Dr S. Staff very nice. Each person very professional and caring. Dr. S instills confidence and answers questions. Had MRI brain, heart. Dr. S. surprised with difficulty walking and with speech. (I think meds causing) Says can help Trigminal Neuralgia. Dynamic myelogram 9/23, Blood Patch (high volume, high pressure) 9/24. Surgery 9/29 if BP doesn't work.
"Remember each day is a present"
Thanks for well wishes. Health & Happiness Bertha

[mot]

Glad to see that things are going smoothly Bertha. Maybe in a few days you will feel better.
Continued good luck!

M:)

[Berthabutt]

9/23 Dynamic myleogram much better than last myelogram, very different. Pain free. Had Versed (forget drug) and Fentanyl. Trigeminal did not even act up. Good day. Dr. Louehy Anesthesiologist and Dr Maya were wonderful. All staff is wonderful. Dr S. came in after all done to explain everything. Found leak C3-4. Yeah!!!! Blood patch today then maybe surgery Tuesday. will update Friday. Amazing. Always feel great after myelogram can talk and walk better for a couple of hours. Brain is sagging causing pressure on brain stem and trigeminal nerve and other structures due to leak.
Hope, health and happiness to all.
Vickie

[LauraL840]

Glad to hear you are getting answers and they found your leak! Awesome! Hope the patch is all that's needed!

[mot]

Sounds great Bertha. Thanks for posting your progress. It sounds like they have it well in hand!

M:)

[Mommy2Boys]

This is wonderful news! Is this the first time your leak was found, or did they find the general area in your hometown and the Cedars team narrowed down the exact leak level? Are they targeting the patch at the C3/C4 area or going with the high volume thoracic? It sounds like there is a light at the end of the tunnel. So happy for you.

[dreb]

Glad to hear that things are going smoothly for you in LA. I am happy that they found your leak. Best of luck with the blood patch. Take it easy after the BP, rest. Keep us posted.

You are in my thoughts and prayers, and I am wishing for a wonderful outcome for you.

Deb

[Berthabutt]

9/24 Spoke with Dr. S office this AM Cancelled. BP. After careful thought I decided if BP didn't work we'd have to start all over again. It's an individual thing. I have already been through breast cancer I don't want to waste any more time. I am scheduled for surgery on 9/29 with a 4 day stay in hospital. I am happy with my decision.
The leak is at C3-4 and no one could find at home due to psuedomeingincele (fluid filled sac in spine) from C2-T11 putting pressure on spinal cord.

Hotel Best Western Carlyle is nice . Got good rate. ($131 +taxes special rate for Sept) About 1 mile from hospital. Good area. close to Walgreens & some restaurants. (If you can eat)
So no more until Tuesday.
Today was a good day!
Hope, health & happiness,
Berthabutt

[mot]

Bertha, it sounds like you made an excellent decision!
We will all be thinking of you on the 29th and hope it goes smoothly for you.
Just think, in a little while you could be totally out of pain and
on your way to a new life!

M:)

[Mommy2Boys]

I think you made an excellent decision, regarding the surgery. Just curious and trying to educate myself.... will they surgically repair this large pseudomeningocele while repairing the leak? Is there some way to drain this abnormal CSF fluid collection? Was this pseudomeningocele caused by your whiplash injury and was it seen on MRIs in your hometown? You mentioned they did not see the leak in your hometown, but did you know about this large pseudomeningocele? Sorry for the questions, but as a fellow leaker, I'm trying to learn from everyone else's experiences.

[Berthabutt]

I think you made an excellent decision, regarding the surgery. Just curious and trying to educate myself.... will they surgically repair this large pseudomeningocele while repairing the leak? Is there some way to drain this abnormal CSF fluid collection? Was this pseudomeningocele caused by your whiplash injury and was it seen on MRIs in your hometown? You mentioned they did not see the leak in your hometown, but did you know about this large pseudomeningocele? Sorry for the questions, but as a fellow leaker, I'm trying to learn from everyone else's experiences.

Mommy2 Boys
They did see pseudomeningecele at home (sometimes called it a subacranoid cyst). It kept growing but couldn't find leak hole. I am not sure what they are going to do about fluid sacs. We will probably review before surgery. Dr. S. had said that if no longer any fluid to go into sacs, sacs will dry up. Not sure.

All problems were thought to have been caused by a possible whiplash injury causing csf leak. All were seen on MRIs at home except leak location.

Follow-up brain MRI was not done to see sagging of brain stem and artery on Trigeminal nerve causing lots of symptoms. Chiari malformation is pseudo chiari malformation from leak.

Life is a mystery and so is health.
Doctors just try to solve the mystery of health.

Hope, health & happiness,
Berthabutt

[Mommy2Boys]

Thanks for your response. I'm very interested in your case because although I did not sustain a whiplash injuries, my local neurologist and neurosurgeon think my leak is in my cervical area. I got all my symptoms after being instructed to change my neck position swimming. Myelograms inconclusive, but zero opening pressure.

Best of Luck! I know your surgery will be a success!

[dreb]

I, too, think you made a wise decision. I hope that everything goes smoothly, and that you will be feeling well soon! You are in the most capable of hands, Dr. S is the best.

Good luck to you! Keep us posted on your progress! I know you will do great!

Deb

[fuzzy101]

Hi Bertha, This thread is really good information. Please keep updating it. I just had my first BP on Tuesday 22nd. Dont think it fixed anything. Pressure at base of skull returned and fizzing/crackling sensation in neck is back. Anyways hope to talk soon.

Des

By the way....whats the surgery you are reffering to? what is the surgery called and what will they do?

Thanks.

[Berthabutt]

Hi Bertha, This thread is really good information. Please keep updating it. I just had my first BP on Tuesday 22nd. Dont think it fixed anything. Pressure at base of skull returned and fizzing/crackling sensation in neck is back. Anyways hope to talk soon.

Des

By the way....whats the surgery you are reffering to? what is the surgery called and what will they do?

Thanks.

Not sure exactly what surgery is all about yet. Will know more on Monday. Think they do a laminectomy to get to spinal column/leak. I will update as things go along.

Hope, health, & happiness,
Berthabutt

[burk]

Wishing you well!!!!

[Leaky Christy]

We were crossing paths last week. I had a myelogram on Tuesday and a dynamic myelogram on Thrursday. I am glad you didn't have the same expierence as me with the dynamic, it was painful and made me feel very bad. I was going to have the fibrin glue injection but due to the location of the tear Dr. S says the glue is no longer an option. I just spoke with him today and we are also scheduling surgery.

Best wishes on your surgery! Once you are on the road to recovery let me know if you have any tips or suggestions.

Christy

[Berthabutt]

Surgery success today (9/29)! I misunderstood not between C3 & 4, but rather T3 & 4. Leak in front of spine. Surgery, muscle, glue, stitches, flat on back. Able to talk, comfortable w/pain relief. Dr. S wonderful, wonderful, wonderful! Dr. Krandrick, anesthiologist. Today I smiled!

Hope, health, happiness,
Bertha Butt

Written by husband, caregiver and secretary.

[Mommy2Boys]

*sparkle *boogie

[LauraL840]

Great news!

Leak in front of spine sounds scary though?!?! How did they access it to patch it? I hope you continue to feel better and recover quickly! Does Dr. S feel you will have high pressure or is it kind of a wait and see approach?

[mot]

Gee, that is just wonderful Bertha. And a big shout out to Mr. Butt for the post!
On the stomach side you say. That Dr. Schievink sure is good!
Dr. Krandrick was the anesthesiologist.
Anyway, just great! Get well soon!

M:)

[TXCINDA]

I just heard from Dr. S and it sounds like the treatment plan he has in mind is very similiar to yours Bertha. He said that my leak is also in front of my spine and right now, the sac from the leak extends from my neck to my tailbone. He is going to do a dynamic myelogram to pinpoint the leak. If it is pinpointed, he will do the surgery. I'm just so thankful to have some type of plan at this point. I will be anxious to follow your recovery. Please PM me if you have any words of wisdom. My husband is pretty nervous about this surgery. I think that my nervousness is way below my excitement at this point, but I'm sure it will come.

Thanks, Cinda

[Robbysmom5]

Glad it went well and hope you continue to smile everyday! Please keep us posted.

[Mommy2Boys]

TXCinda,


So, Dr. S found this huge leak whereas the radiologists in Dallas missed it? Was this from the regular CT myelogram or did you end up having the intrathecal gado? Curious because I remember at one point your images were read as normal. Seems that would be hard to miss. :eek:

Glad you have a plan!!! As for me, blood patch today performed with 180 degree tilt. This worked for 3 weeks for me initially, whereas the 2nd two did nothing without a tilt.

Next step for me would probably be Dr. Gray.

Keep us posted.

[TXCINDA]

He did find it on the CT myelogram, which was done in June. The docs here did not find it and went on to do a nuclear medicine study and the intrathecal gado (neither of which identified a leak!). I'm so thankful that Dr. S does what he does and so glad for a plan. Thanks Mommy2Boys and I wish you success for your blood patch!

[fuzzy101]

This thread is so good. To know that the leaks sometimes get missed is re-assuring also. I am due for CT Myelogram on 13th, hopefully it shows.

Bertha keep us updated on your progress.
TXCINDA please keep us updated with your status too.!!

Thanks and may you both have a successfull road ahead.

[Leaky Christy]

WOW BerthaButt that is awesome! I am scheduled for the same surgery with Dr. S on the 9th. My tear is also on the other side of spine at T1-T2. It is nice to hear that you smiled, it gives us out there still suffering hope! I am especially glad that Dr. S doesn't have to perform the surgery through the chest on any of us so far!

Best wishes on a speedy recovery!

Christy

[punctured]

He did find it on the CT myelogram, which was done in June. The docs here did not find it and went on to do a nuclear medicine study and the intrathecal gado (neither of which identified a leak!).

TXCINDA, well, if the original team of doctors did not find a leak, then it may simply mean that you do not have a leak or that it just doesn't contribute to your medical problems.

This seems to have been the situation for most patients here as far as I've been able to gather over the last year and a half.

Here's a recap of the scenario that's played out here over and over. So, you (generic "you") are the patient. You are like many of the forum members afflicted by a devastating headache that more or less responds to changes in position.

The expert team at your hospital does not find a leak.
You read on this forum that there are doctors who find leaks where others don't. You find supposedly relevant scientific articles on this forum posted by the permanent members, many of whom are not leakers and who prolifically post for reasons unknown. You trust the forum. So, you go to such a doctor. The doctor is very nice, of course. And lo and behold, he finds that leak.
You receive support from the strangers in this forum to go for it. The surgery permanently weakens your back.
You don't get any better. This happens to the large majority of people who have posted their story here. You receive prayers from the forum. You are a hero.
You are encouraged by forum to do it again. So repeat 2, 3, 4 a number of times. The record is shocking: six surgeries, for naught.
You are sent to the headache specialist who should have coordinated you care in the first place. You are never heard from again.


Anyone who's contemplating surgery for leak despite the negative findings of their regular doctors should read:

Normal initial MRI is predictive of poor outcome in spontaneous intracranial hypotension.
W.I. Schievink, M. Marel Maya and Charles Loyu. Cranial MRI predicts outcome of spontaneous intracranial hypotension. Neurology 200;64:1282-1284.

As I wrote earlier:

At least I think it's thought provoking, scientifically and ethically, that one team of leak doctors seems to think that what should be the easiest cases are the most difficult and then that this same team keep seems to push the poor outcome cases to the extreme. Maybe their tallies have changed or maybe this quote turns out to misinformation (or wrong as so much written in medical journals is). But what we've seen on this forum seems to support exactly that: treatment for a large category of supposed leaks simply doesn't work.

Personally, I think that these doctors tend to treat a non-existent condition (except when the leak is obvious, in which case your own doctors would have found it).

I'm so thankful that Dr. S does what he does and so glad for a plan.
It's too early to be thankful, but not to early to be hopeful of course.

Also, on a negative note, but it's essential to know this: medical forums sometimes are attended by people with purely psychiatric conditions. You can't trust what you read here. In any case, don't let anybody cheer you on, in one direction or the other.

This is all very serious, your situation and your decisions. For anybody facing surgery, do keep your options open and do ask for second opinions. Consider carefully which doctor may be right. Best of luck.

P.

[TXCINDA]

P.

While I appreciate your concern, I feel very comfortable with my decision to consult with and seek treatment options with Dr. S. I have had consultations, treatments, blood patches, imaging studies and surgery-with ENTs, neurologists (including 2 headache specialists) and neurosurgeons. I have had 1st, 2nd, 3rd, and 4th opinions. The neurosurgeons believe that there is another leak but have not been able to find it with the studies available to them. From what I have read in research as well as on the forum, this is not such an unusual situation. I am not looking to be a hero, just want to be healed. I am not comparing my situation to anyone and can only truly understand my own experiences. I am the only one that knows what I am feeling and I have to be my own advocate. I am not relying on the forum for instruction on what to do. I am relying on the forum for support and compassion. Learning of the experiences of others and the course of treatment that has/has not worked for them, is very helpful. This is an isolating problem and I am happy to have found that there are others in a similiar circumstance. I believe that humans should be more supportive of each other and offer insight when they can. It is up to the recipient on whether or not they accept it or find it relevant to them.

I don't believe it is too early to be thankful, as I am thankful that there are physicians that spend time trying to help people in my situation. I am also very hopeful that Dr. S will offer a course of treatment that will resolve this. I most definitely understand that this is a serious situation and I am not taking any of it lightly.

Cinda

[punctured]

I feel very comfortable with my decision
That's great. I wish for your speedy recovery.

Importantly, as you write individual cases vary, and none of us understand your particular situation. Certainly, I don't. And leaks with certain defining characteristics are not uncommon.

P.

[Mommy2Boys]

TXCINDA,

Please keep us posted. I would share with the Dallas radiologists Dr. S's findings for their comments and educational purposes. A zero opening pressure, orthostatic headaches, and prior lumbar drain alone sound highly suspicious of a leak. In my personal journey, I have stumbled across other people who have had this condition. They are not on these forums because they are fixed and leading normal lives. Best of luck!

[TXCINDA]

Thanks so much Mommy2Boys. I definitely plan on sharing this info. with my docs. My neurosurgeon said he is very interested in learning what Dr. S finds. He told me he wants "to be educated" but also said that he is not knowledgeable enough about this condition to know where to go from here. I appreciate that honesty, even though I was frustrated with him not being able to fix it.

I hope to be one of those people who leave the forum after getting fixed! But I will keep you posted. I don't leave until Nov. 16th and the tenative surgery is scheduled for Nov. 19th. Thanks for your email and support!

[dkdreamer1]

I am one who like so many here took a long time to identify the location of my leak/leaks. I however was told within a week of my dibilitating onset that i was leaking. I was patched and got some relief. I already had an awesome nuerologist and pain specialist, who punctured, treated my daily chronic headaches from TMJ bone deformities. As well as migraines requiring infusions to help.

I write this because had that been my only headaches and continuing pain i would not have ended up here on this board. My new and exciting headaches had and continue to have all of the low pressure symptoms. Which when i googled brought me here.

Although my home town doctors recognized my condition, none had treated someone who was spontaneous. So, for myself, punctured i was thankful for this site and info on doctors. I was equally excited that the were men enough to admit their lack of experience.

So, we don't all live in areas where we have treatment or testing options available. They did the cisternogram only 1-2 times a year. My doctor called and worked with duke, (not Dr. Gray) to even do and understand how to read. Leaking showed up but they couldn't pinpoint. So experience is valuable when dealing with this condition.

We, here are all part of the infancy in treating and understanding this condition.

This forum is invaluable for support and information.

I like everyone here are responsible for our own care and lives. Because of that we have come here to learn and seek help and advice. I trust that what I, or others write is what we personally have come through or learned, but I in no way take advice from cyber space as what dictates my care.

Cinda,

The above being said i hope all goes well, and that you remain confident in your treatment and physician. I, too think it to be important for us to share our experiences with our home town Docs. Mine have all spoken numerous times with Dr. Gray and although they can't fix me, they understand better how to manage my symptoms. FYI/ i have ot had surgery.....no bias for or against

DK

[fuzzy101]

Yeah Agreed DK. I think sharing ideas/experiences on forums is one of the best tools, especially an active thread like this where everyone gives input and shows support. Its hard each day to go about a normal life some days especially with having to try and act or feel normal when your physical/emotional state is not at its best, always reassuring to log on to a thread like this and hear positive talk or different ideas. I am sure we are all aware though of not getting our hopes up too quickly or taking someones opinion and acting without doing sufficient research as I am also sure that we have all been at rock bottom in terms of our emotional state. Keep up the good work everyone. My CT Myelogram is coming up in a week and i'll be sure to post results up.

[Berthabutt]

Thank you all for your kind wishes and wonderful support.

I am finally strong enough to type. On top of everything you, I had to go through severe gall bladder attack. Of all times. No one could understand what was happening.
Surgery went well then Gall Bladder episode happened with 2 days of hallucinations and vomiting of green bile. Miserable 2 days.
Dr Davidson saved me from any more vomiting & found cause. Wonderful GI DR.

Had headache while laying down Diamox. (High pressure) Then no headache. When I came I had problems with rubbery legs, swallowing problems, talking problems, urinating problems, etc. Now I can walk hall with walker I feel strength in legs, I talk ok, swallow ok, urinate ok. MRI was done and brain is starting to float.

Remember everyone is different so you may be different too but I would do it again.

When doing Dynamic myelogram you want Fentantyl (If Dr thinks it is safe for you to have and Versed. Versed is the forget drug. So if it was painful you can't remember it. So much better for you. Myelogram does not need to need to be painful. Ask for pain free Myelogram so can at least give Versed so you can't remember it.

I was dizzy for a while but its getting better.

I did not have blood patch because if it solved problem even for a few days you go home and and it doesn't always work. (I had never had one) I wanted surgery, Trip is expensive. I wanted have my life back.

Staff at Cedars wonderful and caring!
I would do again if it meant I couldn't be a whole person.

We stayed at Best Western Carlyle Inn. Have membership get points. Check Internet they have special, AAA, AARP discounts if you are that old, my husband is. we pay $150. plus taxes. Better rates on Internet. We are 1.5 miles from hospital. $10 Taxi 1 tip. Bob husband walks here during day safe area. Walgreens & restaurants close by. Mall close to Hospital. Mall across from big cheaper Mall. Soup Plantation, soup & Salad place at cheaper mall. Cheaper mall has stores cheaper prices.CVS big store the has food.

Would I do again. In a heart beat. Pressure on brain stem letting up I can walk again with walker right now but that's temporary. I can talk good. Open whole mouth & smile & laugh. That's something you miss when you can't do it.

Hope, health & happiness,
Berthabutt RN 15 yrs

[Leaky Christy]

Yeah Berthabutt!
Thank you for the follow-up. By any chance did your husband stay with you in your room? Mine wants to but I wasn't sure if he would be able to and if the rooms had a chair that laid back?
Christy

[TXCINDA]

Christy,

When is your surgery?

Cinda

[Leaky Christy]

Friday, yeah!

[Berthabutt]

Yeah Berthabutt!
Thank you for the follow-up. By any chance did your husband stay with you in your room? Mine wants to but I wasn't sure if he would be able to and if the rooms had a chair that laid back?
Christy

Christy they give you a cot & you have a private room. My husband did stay in my room for a few nights. It's kinda scary. Make sure you can stay a couple extra days after discharge so you feel good to travel. They have w-fi so can use computer. Nice staff.
I will pray for your successful surgery. Dynamic myelogram has only been used since January. Ask for painfree myelogram.

Don't be brave take pain meds as needed. You heal better if comfortable.
breathe better. Walk better. Will have foley catheter for first couple days which is a God send while on flat back for 24-48 hours.
Should not be uncomfortable.

Let Dr. S. know all your concerns. He can't help if you don't let him.

We will be here until Tues. Staying in hotel. Discharged today.

Hope, health, & Happiness
Berthbutt RN 15 yrs
:)

[TXCINDA]

Christy,

I will be thinking of you as you embark on this leg of your journey. I hope that you will keep us posted on how you are doing. Bertha has been so kind to answer my many questions as I will be seeing Dr. S on Nov. 17th. I may ask about your experience as well, just to fill in some of the gaps. Take care and best wishes!

Cinda

[Berthabutt]

Today is the 2nd day after discharge to hotel. We practice walking with my walker in our room. Hotel has been fantastic about extra pillows for comfort & everything. My vision had problems at first but Dr S said cranial nerves were probably swollen after surgery. Vision is better today. He had to adjust Diamox once. I am feeling stronger with each day. I even got my sense of taste amazing. I didn't realize how much I had lost cause you are just worried about surviving each day. If I write funny, I write like a nurse does in in a chart. I forget to put in the "the", "an" & etc.

Each day I get a little stronger. Surgical area still hurts which is to be expected.

Tuesday we see Dr S hopefully for last appointment and to get stitches out. I have stayed out here a little longer to make sure everything was alright. Then we take redeye home because it has no stops , only 4.5 hr to home.

Hope, Health & Happiness,
Berthabutt RN 15 yrs

[fuzzy101]

Good news Bertha. I have good news also. I had my BP done 2 weeks ago and i was heading for a CT Myelogram next Tuesday as the symptoms had come back pretty much in full. But for 3 days now i have been feeling so good (fingers crossed). I am more happy about the diagnosis than anything, yes my problems reated to a CSF leak. I have only had one BP done and the specialist here used 22ml's of blood and i was told to basically lye flat for the next 3-4 days, i did, the symptoms returned, jhowever 3 days ago they went, it is so weird to have full head pressure then in the next few minutes have nothing.

Just so your familiar my symptoms were:
Extreme Base of skull pressure, vision problems, balance problems, felt i was walking on uneven surface, vertigo (rocking sensation not spinning sensation) and a constant tremor through body almost like a small parkinsons or a small essential tremor, brain fog - couldnt think straight.

Also weird sensation when i look straight and turn my head left to righ i could feel almost a pulling sensation on the back of my head/neck/eye muscles. Also had a slight fizzing/crackling sound my neck when i took a deep breath of air in.

I have cancelled my myelogram until further notice.

Wish all of you well and ill keep you updated.

[Berthabutt]

Good news Bertha. I have good news also. I had my BP done 2 weeks ago and i was heading for a CT Myelogram next Tuesday as the symptoms had come back pretty much in full. But for 3 days now i have been feeling so good (fingers crossed). I am more happy about the diagnosis than anything, yes my problems reated to a CSF leak. I have only had one BP done and the specialist here used 22ml's of blood and i was told to basically lye flat for the next 3-4 days, i did, the symptoms returned, jhowever 3 days ago they went, it is so weird to have full head pressure then in the next few minutes have nothing.

Just so your familiar my symptoms were:
Extreme Base of skull pressure, vision problems, balance problems, felt i was walking on uneven surface, vertigo (rocking sensation not spinning sensation) and a constant tremor through body almost like a small parkinsons or a small essential tremor, brain fog - couldnt think straight.

Also weird sensation when i look straight and turn my head left to righ i could feel almost a pulling sensation on the back of my head/neck/eye muscles. Also had a slight fizzing/crackling sound my neck when i took a deep breath of air in.

I have cancelled my myelogram until further notice.

Wish all of you well and ill keep you updated.


Good for you fuzzy. Just no straining, bending or anything else that could endanger it for a while. Feeling human is unreal. Did you ever have a brain MRI? sounds like leak could have effected the brain stem like mine. If you research what brain stem does? My prayers are for for continued success.
Hope, health & happiness,
Berthabutt

[fuzzy101]

Did you ever have a brain MRI? sounds like leak could have effected the brain stem like mine. If you research what brain stem does? My prayers are for for continued success.
Hope, health & happiness,
Berthabutt

Yeah im taking it really easy for the next few weeks. Yeah had brain MRI with both contrast and non contrast. My leak was definately at the top of my spine because i can hear the fluid leak out. All i know is that my symptoms were similar to chiari malformation symptoms.

You too bertha keep me updated.

[Robbysmom5]

What wonderful news posted on BT today!
Berthabutt, fuzzy & LeakyLaura - may you continue to feel better!!!

[Berthabutt]

Yeah im taking it really easy for the next few weeks. Yeah had brain MRI with both contrast and non contrast. My leak was definately at the top of my spine because i can hear the fluid leak out. All i know is that my symptoms were similar to chiari malformation symptoms.

You too bertha keep me updated.

Fuzzy
Dr. S said my Chiari was Pseudo Chiari caused by leak & low pressure & CSF. Once leak is fixed it should fix itself.
Bertha

[fuzzy101]

Dr. S said my Chiari was Pseudo Chiari caused by leak & low pressure & CSF. Once leak is fixed it should fix itself.
Bertha

Yeah i would say that would be the same case with me. Im not sure how much blood doctors in the US use in BP's but my Dr used 22mls for my first one. Is this above average"? also he said if this didnt completely fix it he can put a bit more but also put the needle in a bit higher.... I am loving his work right now though, i can take a deep breath of air in without feeling like my heads expanding from the inside

[Berthabutt]

Yeah i would say that would be the same case with me. Im not sure how much blood doctors in the US use in BP's but my Dr used 22mls for my first one. Is this above average"? also he said if this didnt completely fix it he can put a bit more but also put the needle in a bit higher.... I am loving his work right now though, i can take a deep breath of air in without feeling like my heads expanding from the inside

Fuzzy
I am so happy for you! Just be careful! My husband says I get too excited & think I can do it all & screw things up. No bending, reaching, carrying or straining for a while. Take it easy.

As far as BP I never had one. So I don't know. I think not sure most give low volume BP. I think 22 ml is considered high volume. Check Mayo Clinic or Dr Schievink +high volume Blood patch.

Lots of love, hope, health, & happiness,
Bertha

[Ehlers-Danlos gal]

Im not sure how much blood doctors in the US use in BP's but my Dr used 22mls for my first one. Is this above average"? also he said if this didnt completely fix it he can put a bit more but also put the needle in a bit higher....

You mean cc, not ml, correct? Actually, I recall Dr. L explaining to me that other physicians typically give 22 cc, whereas he typically gives up to 90 cc. He could only get in 27 cc on me, because of my developing radiculitis at the 27 cc level, and only at the L4-5 interspace. My thoracic attempts failed due to an abnormality resulting in subdural injection. But at least the 27cc floated my brain for a day or two resulting in temporarily curing the HA, which proves I do have a leak. Unfortunately, it just didn't 'patch' the leak, and the fluid seeped out again pretty quickly.

[Mommy2Boys]

cc=ml

I am a skinny gal with a small epidural space. The radiologist who has performed 2 of my patches said he generally can use more blood in larger people (the epidural space is composed of some fat?, according to him). I find I can tolerate more blood with IV pain medication and the slower they inject the blood. Also, I believe it's easier to inject more blood in the lumbar region than thoracic and cervical regions. Good information by EDG. I couldn't remember how much blood Dr. Schievink and his team inject, but they use higher volumes, much higher than I received during my 4 failed patches. Well, one worked for 3 weeks.

[fuzzy101]

You mean cc, not ml, correct?

Hi, No i mean 22ml of blood. Thats what the Dr said. What is CC? I live in
Australia so it might have something to do with the metric conversion? but i know he said ml definately.

[fuzzy101]

keep in mind that my BP didnt start to work until 2 weeks after it. Also my symptoms returned in full for those 2 weeks all up until about 4 days ago. So Give it time. I would say give it 3 or 4 weeks before you choose to go for another patch. I would also say to stay in bed for 4 days after the procedure and limit the range of motion to your head. Also as soon as you feel the headache or symptoms come back lye back down. This is what i did. Then after about 5 good days of rest you can be up for longer periods of time. Symptoms will most likely return however if your lucky after a few weeks you will notice significantchange. However i put al this down to my medical team and the 22ml of blood that was injected.

[spots]

cc's and ml's are the exact same thing

[fuzzy101]

cc's and ml's are the exact same thing Cool. Thanks. I was too lazy to google it. haha. Also i remember on house "give that guy 20 CC of morphene" ahh what a good show.

Just an update. Symptoms seem to be coming back not as bad, base of skull/head pressure creeping back, I can hear it leak again like a fizzing sound in neck - Closest thing i can think of to the sound is if you get your index finger and press it on the back of your head then run it down so your squashing the hairs on your head, thats the sound coming from my neck. And shockwaves in head back, only noticable when i sit completely still. Anyways still thinking positive, wose case I book in for the CT myelogram that i cancelled.

Hope all is well with all of you. Talk soon.

[Berthabutt]

Cool. Thanks. I was too lazy to google it. haha. Also i remember on house "give that guy 20 CC of morphene" ahh what a good show.

Just an update. Symptoms seem to be coming back not as bad, base of skull/head pressure creeping back, I can hear it leak again like a fizzing sound in neck - Closest thing i can think of to the sound is if you get your index finger and press it on the back of your head then run it down so your squashing the hairs on your head, thats the sound coming from my neck. And shockwaves in head back, only noticable when i sit completely still. Anyways still thinking positive, wose case I book in for the CT myelogram that i cancelled.

Hope all is well with all of you. Talk soon.

Fuzzy,
Hope all is well. If you go for CT Myelogram make sure it's not a painful one or it's at least one you can't remember with Versed (forget drug). Sometimes if a leak is high up my Drs have told me blood patch doesn't work for long. Hopefully this is a temporary set back. Make sure to get a copy of all reports & CDs in case you need them. Read all your reports.

Have Drs seen leak? Have they done brain MRI?

Good luck! My prayers are with you!

Each day gets a little better for me. But it's a lot of work getting my strength back & muscles. I probably lost about 30# in 2.5 months.

We head home to Florida after last follow-up appointment with Dr. S. Tuesday.

Hope, health, and happiness,
Berthabutt

[fuzzy101]

Fuzzy,
If you go for CT Myelogram make sure it's not a painful one or it's at least one you can't remember with Versed (forget drug). Sometimes if a leak is high up my Drs have told me blood patch doesn't work for long. Have Drs seen leak? Have they done brain MRI?
Berthabutt

Hi Bertha, what do you mean by painful Myelogram? not sure if its going to be painful or not however the specialist that will be conducting is the one of the most reputable, so hopefully it doesnt hurt! I will ask about the Versed, I dont think they will use this though. Yeah i was going to ask you about the Myelograms, any suggestions with this? as in tell the Dr who is doing it to tilt me upside down etc? I want to give all chances that leak will show, especially if its in cervical area. Dr's havn't seen a leak yet, so it could turn out to be something else but all other avenues have been investigated. Have had Mri brain with and without contrast (Gadolinium) - came up negative but neuroligist has said that some leaks especially small ones dont often show up as they are smaller than the imaging resolution. So not sure whether its a leak or not definately however i do know that since Dr mentioned CSF leak I have done a ton of research and spoke to alot of people and its the closet diagnosis i have got. Really, nothing else has come close. For the last 3 days (before symptoms came back) I was feeling the best ive felt in 2 years, so BP would have something to do with it, Also when blood went in via BP I felt significant difference, Dr said well its looking more like a leak because the blood added to the overall volume of liquid within the dura so brain would have come off a bit as there was more fluid. So still on this path until advised otherwise by neuro & surgeon.

Prayers and thoughts are with you too!! Anyways will be booking in for Myelogram within the next week hopefully.

[Berthabutt]

[QUOTE=fuzzy101;393094]Hi there, what do you mean by painful Myelogram? not sure if its going to be painful or not however the specialist that will be conducting is the one of the most reputable, so hopefully it doesnt hurt! I will ask about the Versed, I dont think they will use this though. Yeah i was going to ask you about the Myelograms, any suggestions with this? as in tell the Dr who is doing it to tilt me upside down etc? I want to give all chances that leak will show, especially if its in cervical area. Dr's havn't seen a leak yet, so it could turn out to be something else but all other avenues have been investigated. Have had Mri brain with and without contrast (Gadolinium) - came up negative but neuroligist has said that leaks dont often show up as they are smaller than the imaging resolution. So not sure whether its a leak or not definately however i do know that since Dr mentioned CSF leak I have done a ton of research and spoke to alot of people and its the closet diagnosis i have got. Really, nothing else has come close. So still on this path until advised otherwise by neuro.

Fuzzy,
Did you have a lumbar puncture with a low pressure. Get your report on brain see what it said. Was your brain sagging? or low on fluid? Ask Neuro lots of questions but also read reports. My neuro & Dr. S said I had dropped brain and brain sagging, low pressure & fluid. I also had sagging brain stem and artery over Trigeminal Nerve.

Get your CT Myelogram. Ask if it is painful. If it is ask if you can have Fentenyl if it is safe for for you or Versed (the forget drug) so you can't remember what it was like. I have had two painless or I did not remember or and one painful.

Drs know what to do I don't as how to do myelogram. I just don't like pain and I deal with pain management as a nurse at times. Good luck with all.

Hope, health, Happiness,
Berthabutt

[fuzzy101]

Fuzzy,
Did you have a lumbar puncture with a low pressure. Get your report on brain see what it said. Was your brain sagging? or low on fluid? Ask Neuro lots of questions but also read reports. My neuro & Dr. S said I had dropped brain and brain sagging, low pressure & fluid. I also had sagging brain stem and artery over Trigeminal Nerve.

Get your CT Myelogram. Ask if it is painful. If it is ask if you can have Fentenyl if it is safe for for you or Versed (the forget drug) so you can't remember what it was like. I have had two painless or I did not remember or and one painful.
Berthabutt

Hi Bertha, Never had lumbar puncture also MRI brain reported nothing, no sagging. however my theory is that most tests cannot rule on Psudo Chiari or CSF leaks as when you lye down your brain is not resting on your spine its back where it should be, they need to do MRI's with the person standing up or vertical MRI. I dont mind pain so i dont think i will ask for the forgetful drug. The Dr's here are really good like really really good and do CT myelograms all the time so should be all good. I am booked in for Friday 23rd.

How are your symptoms going anyways?

[Berthabutt]

Hi Bertha, Never had lumbar puncture also MRI brain reported nothing, no sagging. however my theory is that most tests cannot rule on Psudo Chiari or CSF leaks as when you lye down your brain is not resting on your spine its back where it should be, they need to do MRI's with the person standing up or vertical MRI. I dont mind pain so i dont think i will ask for the forgetful drug. The Dr's here are really good like really really good and do CT myelograms all the time so should be all good. I am booked in for Friday 23rd.

How are your symptoms going anyways?

Sorry but your theory is wrong. Your brain & chairi does not move up or down just because you are laying down or standing up. Ask your radiogists. All my tests did show lying down. I viewed all my MRIs & tests. Is yours a relatively new leak? Leak in to sac from c2-t11.

Pseudo chiari is real chiari but is caused by lack of fluid & pressure not by other reasons & can heal itself once leak fixed.

Myelogram, it's not how good they are it's the fluid they put in spine and then moving you around which they have to do. Good luck on the 23rd.

No symptoms except some Trigeminal Neuralgia. Have to to strengthen legs using walker.

Hope, health, happiness,
Berthabutt

PS Going home Tuesday night back to Florida.

[fuzzy101]

Sorry but your theory is wrong. Your brain & chairi does not move up or down just because you are laying down or standing up. Ask your radiogists. All my tests did show lying down. I viewed all my MRIs & tests. Is yours a relatively new leak? Leak in to sac from c2-t11
PS Going home Tuesday night back to Florida.

If i have chiari mine is very small maybe. Im not sure. ill have to wait and see if myelogram comes back positive. Hoping it shows something..

I remember it was April 08 and thats when everything changed. Heard a fizzing sound come from neck and instant head pressure and felt like something pulling on the back of my eyes + diziness. So if it is a leak its not new its more than 1.5 years old. Because also i got told everything was anxiety i lived life as normal. Went ot Gym, Ran marathons etc. Which can only make things worse. Symptoms have been contstant since then.

Have a safe trip home. Talk soon

[Leaky Christy]

Hello All,

I just wanted to send a quick update on my surgery thus far. Surgery was on 10/9 and went well. Tear was fixed with patch & glue. It was in the front of the spine at T3-T5 so muscles are sore, expecially when upright (sitting or standing). I am hoping to be discharged tomorrow, 10/14.

Thank you for all of the advise, it has helped more than ever. Understanding everyone is different but knowing it something simular comes up it puts your mind at ease that it is not just you.

I have be fortunate not to have had a high pressure HA as of yet so I am very thankful. It does seem to help to put yourself on a schedule with the pain meds and muscle relaxers. Some of the RNs said they would come back in four hours with it but didn't and others said that it is as needed so unless I stated I needed it they wouldn't bring it. The worst part was having the strong pain med (shot) getting to sleep but then waking up in pain. I have found that with scheduling the pain/muscle relaxing pills it has helped manage the pain. This will make me feel more comfortable that I can manage the pain on my own once leaving the hospital.

Dr. S and staff has been SO SO SO great to me and my family.

Christy

[Robbysmom5]

Hi Christy -
Hope you continue to feel better. Sorry that managing the pain management has been difficult, we've been there too. Hope you have a safe trip home.

[fuzzy101]

Hi Christy, Happy to hear your OK. take care over the next few weeks. Keep us updated.

[Berthabutt]

Hello All,

I just wanted to send a quick update on my surgery thus far. Surgery was on 10/9 and went well. Tear was fixed with patch & glue. It was in the front of the spine at T3-T5 so muscles are sore, expecially when upright (sitting or standing). I am hoping to be discharged tomorrow, 10/14.

Thank you for all of the advise, it has helped more than ever. Understanding everyone is different but knowing it something simular comes up it puts your mind at ease that it is not just you.

I have be fortunate not to have had a high pressure HA as of yet so I am very thankful. It does seem to help to put yourself on a schedule with the pain meds and muscle relaxers. Some of the RNs said they would come back in four hours with it but didn't and others said that it is as needed so unless I stated I needed it they wouldn't bring it. The worst part was having the strong pain med (shot) getting to sleep but then waking up in pain. I have found that with scheduling the pain/muscle relaxing pills it has helped manage the pain. This will make me feel more comfortable that I can manage the pain on my own once leaving the hospital.

Dr. S and staff has been SO SO SO great to me and my family.

Christy

Christy,
Good luck in all you do.
I went home 10/13/09.
Each day gets a little better.
Remember it took a while to get this way & it takes a while to heal.
My husband has to remind me of this. I want everything yesterday. Building up my strength is the hardest thing right now. I lost 33# in the last 2.5 months due Trigeminal Neuralgia.

Hope, health & happiness,
Bertha

[Ehlers-Danlos gal]

Hello All,

I just wanted to send a quick update on my surgery thus far. Surgery was on 10/9 and went well. Tear was fixed with patch & glue. It was in the front of the spine at T3-T5 so muscles are sore, expecially when upright (sitting or standing). I am hoping to be discharged tomorrow, 10/14.

Thank you for all of the advise, it has helped more than ever. Understanding everyone is different but knowing it something simular comes up it puts your mind at ease that it is not just you.

I have be fortunate not to have had a high pressure HA as of yet so I am very thankful. It does seem to help to put yourself on a schedule with the pain meds and muscle relaxers. Some of the RNs said they would come back in four hours with it but didn't and others said that it is as needed so unless I stated I needed it they wouldn't bring it. The worst part was having the strong pain med (shot) getting to sleep but then waking up in pain. I have found that with scheduling the pain/muscle relaxing pills it has helped manage the pain. This will make me feel more comfortable that I can manage the pain on my own once leaving the hospital.

Dr. S and staff has been SO SO SO great to me and my family.

Christy

Best wishes to you Christy. Just a word of precaution, according to the posts here, it seems like if you can lie down for a long time, instead of getting up, you might have a better success of healing permanently.
I'll keep my fingers crossed for you.